My Great Strides Story
Jenny Tenney
Jenny Tenney
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
The Tiny but Mighty Tenneys consists of three brave little CF warriors. Emma Rose is the oldest and is 6. Lila Faith is 4 and Jonah is 1. All three of them have double DeltaF508 mutations. Both girls are currently taking the miracle drug, Trikafta. Jonah is on Orkambi until he turns 2 and then can take Trikafta. Emma has had the most trouble with CF so far. She was born with Meconium Illius and had to have an Iliostomy performed at 4 days old. She had to wear an ostomy bag for about a month before it was thankfully reversed. She spent 89 days in the NICU before getting to come home. While in the NICU, she ended up getting E. Coli Sepsis from her Broviac site. She has had numerous admissions throughout her life and continues to struggle with weight gain. Before Christmas, she experienced a rectal prolapse. We did not know that was a common occurrence with CF patients.
Lila is tiny for being 4, but she is as feisty as can be! She struggles with weight gain too and has had quite a few admissions as well. Luckily, for her, Trikafta has allowed her Pancreas to begin working correctly and on its own. She no longer as of now has to take enzymes with her meals. Emma and Jonah do still have to take enzymes when they eat. All three of them have to take many medications and get breathing treatments to stay as healthy as they can.
Jonah is the baby and he is doing the best out of all three of them! Both girls have g-tubes due to poor weight gain, but Jonah does amazing with eating. The girls have a night feed that runs all night while they sleep. Jonah needs to show his sisters how to eat and gain weight…lol.
Before Emma was born, everything with my pregnancy was perfect. Up until the last few ultrasounds, they were seeing her bowels being dilated. At 37 weeks I was induced to have her with several different suspicious possibilities of the cause. We were in complete shock and heartache when we learned once she was born and had Meconium Illius that she most likely had Cystic Fibrosis. Once we received her Newborn Screening, it confirmed her diagnosis. Once she was a little older, a Sweat Test was completed which also confirmed CF. After having her, my husband and I learned that we both are carriers of the CF gene. With that being said, our babies only have/had a 25% chance of having Cystic Fibrosis. We were and are still completely heartbroken for this diagnosis for all three of our babies. We will never stop fighting for a cure and we are hopeful that will be found one day very soon!
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
The Tiny but Mighty Tenneys consists of three brave little CF warriors. Emma Rose is the oldest and is 6. Lila Faith is 4 and Jonah is 1. All three of them have double DeltaF508 mutations. Both girls are currently taking the miracle drug, Trikafta. Jonah is on Orkambi until he turns 2 and then can take Trikafta. Emma has had the most trouble with CF so far. She was born with Meconium Illius and had to have an Iliostomy performed at 4 days old. She had to wear an ostomy bag for about a month before it was thankfully reversed. She spent 89 days in the NICU before getting to come home. While in the NICU, she ended up getting E. Coli Sepsis from her Broviac site. She has had numerous admissions throughout her life and continues to struggle with weight gain. Before Christmas, she experienced a rectal prolapse. We did not know that was a common occurrence with CF patients.
Lila is tiny for being 4, but she is as feisty as can be! She struggles with weight gain too and has had quite a few admissions as well. Luckily, for her, Trikafta has allowed her Pancreas to begin working correctly and on its own. She no longer as of now has to take enzymes with her meals. Emma and Jonah do still have to take enzymes when they eat. All three of them have to take many medications and get breathing treatments to stay as healthy as they can.
Jonah is the baby and he is doing the best out of all three of them! Both girls have g-tubes due to poor weight gain, but Jonah does amazing with eating. The girls have a night feed that runs all night while they sleep. Jonah needs to show his sisters how to eat and gain weight…lol.
Before Emma was born, everything with my pregnancy was perfect. Up until the last few ultrasounds, they were seeing her bowels being dilated. At 37 weeks I was induced to have her with several different suspicious possibilities of the cause. We were in complete shock and heartache when we learned once she was born and had Meconium Illius that she most likely had Cystic Fibrosis. Once we received her Newborn Screening, it confirmed her diagnosis. Once she was a little older, a Sweat Test was completed which also confirmed CF. After having her, my husband and I learned that we both are carriers of the CF gene. With that being said, our babies only have/had a 25% chance of having Cystic Fibrosis. We were and are still completely heartbroken for this diagnosis for all three of our babies. We will never stop fighting for a cure and we are hopeful that will be found one day very soon!
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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